My experience with Dr. Jarnagin and the Amniotic/Botox

[Violet M]

Wishing you some relief with PT and some good pain management.

Violet

[Hopeitworks]

Thank you!

[April]

Hi Hope,

I'm so glad you will be seeing a pain management doctor soon. I know now (more definitively than before) that nortriptyline helps me. I slowly reduced my dose and I slowly got worse. I've gone back to my regular dose and I'm back to where I was (not great, but I can often sleep through the night). Now I'm remembering that you may be on amitriptyline and said it didn't work? So, maybe this class of drugs won't be helpful. But it will be nice for you to get input from a pain doctor on some options.

Anne77, thank you for your updates as well. I'm so very sorry that amniotic allograft didn't work for you either.

Best,
April

[Hopeitworks]

Thank you, Violet!

[rdeni]

I had also done the amniotic/Botox injection with Dr. Jarnagin in December 2017.
I was skeptical of the procedure based off of all my trials and failures over the last 4+ years. He and his staff seemed so sure that it would work based on his previous patients. They also said if the for the few that the first injection failed, those patients returned and had success with the second one.

Unfortunately, the first injection did not work for me.

My trust in Dr. Jarnagin wavered as soon as the procedure was done. I was very explicit in my conversations with both him and the anesthesiology team that I wanted to be completely conscious during the procedure so I could distinguish where I felt the pain. Since I had had other injections without any anesthesiology, I felt confident it would not be a problem. They put me in a twilight sleep anyway. The team told me I spoke with them during the total entire procedure. Since I was not fully cognizant like I asked to be, I am not sure they injected into the correct area. (It was not CT guided) I was so nauseous after, I had to sleep for hours afterwards. (Not to mention very angry) He didn't even talk to me after the procedure. Very unprofessional. They literally pushed me to the door within 20 minutes of me getting into recovery. I could vent a lot more about that whole charade, but I'll get back to my results.

My Pudendal pain started getting worse around week two, and continued to feel worse than prior to the injection. It felt like my sciatica was injured as the burning was going down my hamstring. By week 10 I couldn’t take it anymore, so I decided to try dry needling to that muscle done. After a few weeks of that, the Pudendal pain was almost gone. I’m not sure if the Botox had caused the other muscles to engage to balance the paralyzed muscles, because I’ve never had sciatica pain before.
I was almost completely pain-free for 4 days. I must have done an exercise that irritated that nerve. Now I’m back to square one. The dry needling does not seem to have any affect on me anymore.

I was toying with the idea of the having in the injection done again, but I just don’t trust that it is the answer. So far in all the treatments I have done, the Valium suppository into my vagina every night has worked the best.

Rdeni

[sadie]

rdeni
thank God u n Hope r posting your results so others do not waist their time n money and get their hopes up for nothing. I cringed when i read this . I am sorry it did not work but i am relieved it did not make things permanently worse.
Glad you r finding some relief with valium suppositorys ...remember , that some of these drugs are absorbed systemicly.
sadie

[Hopeitworks]

Hi Rdeni,

I am sorry to hear the procedure didn't work for you. But, I am not surprised it didn't work. I didn't work for me and a few other individuals that are a part of my "secret" Facebook group. I would NEVER go back to Dr. Jarnagin for several reasons.
1. His staff has not submitted the proper billing requirements to my insurance company. I have a 3k dollar cap and this procedure put me over my cap. I had to pay $2,800 since I hadn't reached my cap. Well, know I have a ton of medical bills from other doctors that want their money. But, technically I shouldn't have to pay them since I met my cap. I have talked to Jarnagin's staff and Cool Springs Surgery center and they are rude and claim my insurance company is to blame. I had to call my insurance company and they call Cool Springs so my insurance company could tell them exactly what is needed. They have yet to turn in the proper forms. In addition, Dr. Jarnagin is billing my insurance company $50k. WOW!!!!

2. There is NO follow up. You will not see the doctor or hear from the doctor ever again.

3. If you question the product to the rep of Rheo he becomes a monster and banes you!

4. It is an assembly line, meaning one patient every 20 mins or so.

If you do decide to get Amniotic again I would go to the doctor in Florida. The doctor in Flordia informed a patient that the amniotic injections are not meant to last forever. You will need to come back every year to receive another one. That is if it works for you. It is funny that Dr. Jarnagin never mentions that and claims one and done. They have a mole that advocates for this product but I have yet to encounter the 400 people that are "cured". I can't find them anywhere!

I am not "cured" and don't think I will ever try it again.

I wish you luck on whatever you decide to do. I have a friend going to the Florida doctor soon and she will post her experience in my "secret" Facebook group. The group is great because no one can find it that is why it is called a secret group. Let me know if you want to join.

Hope

[rdeni]

Hi Hope,
I completely agree with you about the Cool Springs Surgery Center. It is an assembly line. I found all the staff there to be cold and less than professional. I never felt so insignificant as a patient. It's hard for me to explain, but having such a sensitive procedure done, I felt somewhat violated. I tired joking with them to lessen the rudeness in the OR and recovery, but none of them cared. They just went through the motions as fast as they could and when I spoke/asked questions, I felt like they just wanted me to shut up. I still don't know if they really did what they said they were going to do. I have never had so much mistrust with medical personnel ever.
I should have trusted my gut with Dr. Jarnagin and skipped the whole thing. But when you travel so far and feel so desperate, you can tell yourself to let things slide. First I walk into his office and I was completely surprised how old and run down and tiny it was. It was like walking into a ghetto office. My husband and I looked at each other questioning what kind of doctor couldn't afford a nice office. During the consultation he came across as sweet, but had a undertone of impatience and arrogance. Before he examined me, he told me he would be treating both sides. I corrected him and told him it was only one side. So after he examined me, he said both sides of my Pudendal nerves were bad. When he pressed on the opposite side, it did pinch, so I believed him. Retrospectively, I think if anyone was pressed there, it would pinch. Lastly, they told me to be at the surgery center at 7AM, but they didn't come get me until 8:20. Not ONE person apologized. Including Dr. Jarnagin. I really could say so much more, but It would take me hours. Bottom line, I think he's kind of untrustworthy.

I would love to be on the secret Facebook page.
Rdeni

[Hopeitworks]

rdeni,

It is amazing how similar our experience where. To join my group please click this link in Facebook https://www.facebook.com/groups/1296640 ... =bookmarks Complete the questions and add me as a friend. My name is Hope Smith, you will see me on the entry group where you answer the questions. After you complete the entry questions and I have accepted you as a friend I will transfer you to the secret group.

[Violet M]

I am always sad when a PN patient doesn't find relief when they try a particular treatment. So I am disappointed that your treatments with Dr. Jarnagin did not work.

I remember almost 14 years ago when I went to France for surgery from a doctor who I knew almost nothing about and had surgery in a small old hospital where they didn't even have air conditioning and you had to bring your own towels and soap. I was worse for awhile after surgery and wondered if I had made a bad decision. But not once did I blame the physician for it. I knew going into that surgery that it might not work for me, and I think that is the way every treatment for PN should be approached. Go in with your eyes wide open that there are no guarantees with any of the available treatments for this dreadful illness. I think it's the same with amniotic fluid injections. I don't think whether the facility is fancy is what matters. I don't think that how nice the nurses are is what matters. Some of the best most competent nurses I've seen have personalities like battleships. I've been on the nurse side of the equation and I understand from a medical professional's viewpoint that sometimes you are overwhelmed with the number of patients needing care, the neediness of the patients, and the amount of work to be done. I have been in the PN patient's shoes and the caregiver's shoes. Neither is easy.

I understand, how many people who come to these forums are desperate for the miracle cure and if it doesn't work out, it's easy to become jaded and blame a particular health care provider. It is definitely helpful when people come back to the forum and post their experience with a treatment. The more who do, the better. But if a treatment doesn't work, I don't think we can necessarily blame it on the provider. And if you can't find people who are cured on a social media site where only a handful of people have posted, that doesn't mean those patients don't exist. We need to be careful about making accusations of ill-intent when we don't know for sure what motives are in play. I think the important thing is to not give up, and to keep searching for answers until you find a treatment that works for you. You are not going to find a treatment that everyone is raving about that works with 100% predictability for PN. Nor are you going to find a perfect physician for PN. It's important to check to make sure that a physician is licensed and in good standing in the state they are practicing. Dr. Jarnagin is, last I checked.

Regarding conscious sedation -- you might want to read the description at the following link:
https://www.cc.nih.gov/ccc/patient_educ ... consed.pdf
Versed is considered a drug that is used for conscious sedation. It is very possible that is the drug that Dr. Jarnagin's team used. You can be fully conversant on that drug but not remember any of it afterward. So maybe in their view you were cognizant. Next time you have a procedure done, ask specifically what drug is going to be used and if you don't want a particular drug, write that on the signed consent form.

I am grateful for the physicians who are trying new things and trying to help us even though we are a difficult bunch to treat. They could make their money on just treating easy conditions. Many doctors do. But some want to go beyond that and offer more options.

Also, I would like to add that a facebook group that is announced on this forum is by definition not secret. You could have moles and trolls in such a group without knowing it. Anything you post on the internet can become public. So please be careful no matter what social media site you go to, including facebook and pudendalhope.org.

Violet